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ETpro's avatar

How would you handle it is you were diagnosed as having Alzheimer's disease? (see details)

Asked by ETpro (34472points) January 18th, 2011

Don’t worry, I ‘m not asking because anyone here has been diagnosed. I’m reading a great book by Lisa Genova, ”Still Alice”: http://web.mac.com/lisagenova/Site_5/Still_Alice_Welcome.html, which details the life of a respected and tenured Harvard Professor who is only 50 when she is diagnosed with early onset Alzheimer’s. Alice’s PhD is in Psychology with a specialty in Linguistics, so she is painfully aware of what the diagnosis means to her career, her marriage, and her relationship with her three adult children.

She reflects on all the stages of the degenerative disease from mild episodes of forgetfulness and confusion through becoming increasingly dependant on others for everyday affairs like cooking, eating and eventually even knowing how to relieve oneself or clean up afterwards. As she contemplates the point when she will no longer recognize her family, when she will become irrational and abusive to them as they try to care for her, and as she sinks lower into loss of control of excretory function, swallowing and eventually even how to breathe, she wonders if suicide isn’t the best answer.

She wonders, if she does opt for that escape, how long she can wait. By the time the ugly end game is upon her, she likely won’t be able to think through committing suicide. Yet if she acts too soon, how much precious remaining time might she lose that could have been spent with her loved ones?

Slipping into Alice’s shoes, what do you think you would choose to do?

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21 Answers

Simone_De_Beauvoir's avatar

I would be devastated, first of all – it’s a huge fear of mine. I have no idea how I would deal with it – perhaps I’d write tons of letters to myself for later on when I don’t recognize everyone.

lucillelucillelucille's avatar

I would never kill myself.
I would handle an unpleasant diagnosis the same way I have twice before and that is with the determination to live my life to the best of my ability.That means to love and cherish the people in my life and to be happy in spite of bad news….and I am ;)

Winters's avatar

That’s perhaps one of my greatest fears, losing everything slowly as my brain matter slowly dies off. Once it became noticeable, I think I would probably end up ending it myself. I just refuse to live that way in that state.

talljasperman's avatar

I’m sure I would forget to do something about it later

Hawaii_Jake's avatar

@ETpro : GQ. I’m going to look for that book.

I don’t know how I’d handle that kind of diagnosis. I doubt I’d kill myself. I wouldn’t want to miss any of the valuable time with loved ones. I would just have to trust that I would be taken care of some how, some way.

bkcunningham's avatar

My brother-in-law was 42 and diagnosed with Picks Disease, an early onset form of dementia. He was the president of a bank and needless to say had to resign his position. It changed his entire life and the life of my sister. He has always been the most generous and the kindest person I’ve known.

When he was given a diagnosis, he was angry, scared, suicidal, embarrassed. Unimaginable to anyone who hasn’t gone through this. He’s settled into a different life and goes about volunteering for the elderly in the neighborhood. Mowing and snow removal and fixup projects. He said it keeps him busy and makes him feel better. Go figure. We joke when he gets worse, he can hide his own Easter eggs. The kicker is my brother with schizophrenia moved in with them about a year ago. My brother-in-law worries about leaving my sister with not only his own care, but the care of my brother.

lucillelucillelucille's avatar

@bkcunningham You have an awesome brother in law.:)

Seelix's avatar

I’ve looked at that book a few times, but I have always decided not to read it. My grandfather had Alzheimer’s disease and I think that reading it might be too much for me.

I don’t know what I would do in that situation. I don’t think I’d commit suicide, but the possibility of Alzheimer’s scares the bejeezus out of me.

Cruiser's avatar

I would not want to get so sick as to lose not only my memory, but lose control of basic bodily functions. I think caregivers who support those who need that assistance deserve sainthood…but in the end, not only would I not want anyone to have to change my diapers but my wish would be to finish my time on earth with a small semblance of dignity.

ETpro's avatar

Thanks to all for the great answers. Particular thanks to @bkcunningham for sharing such a personal and painful view of what dementia means to a family. I agree your brother in law is a remarkable man, and I hope that a cure is found in time to save him.

I would want to spend whatever time I still had with my family and friends, but like @Cruiser, I wouldn’t want to let it progress to the point where it robbed me of memory and dignity. @lucillelucillelucille I greatly admire your courage.

@Seelix The book is a first novel for Genova and is fabulously written, But it has pulled more tears from me that anything I have ever read before.

DominicX's avatar

My boyfriend’s grandfather shot himself when he found out he was starting to get Alzheimer’s. After seeing what it did to my grandmother (and as a result, to my mom), I can understand why he would do such a thing. I don’t know what I would do, but having had some experience with it, I can say that it’s a horrible disease. I probably would not want to live with it.

faye's avatar

My greatest fear is losing control of bodily functions, but that supposes I’ll know I’m doing it. I don’t want my kids to have to take care of me, use their hard earned money or inheritance for a nursing home, and especially not to have to feel guilty about not visiting. I think it’s better to lose your mom when she still knows you, instead of being sad over and over that she doesn’t recognize you. We’d all have a fabulous vacation and then I’d tell them, and I’d end it.

ETpro's avatar

@DominicX So sad. Of all the diseases I hope they find a cure for, dementia tops my list. It kills in such a demoralizing and agonizingly slow fashion.

@faye Understood.

meiosis's avatar

My mum has had Alzheimer’s for a few years now, and is slowly but inexorably progressing from the early mild stage of pleasant forgetfulness to the middle stage of more confusion. So far, her quality of life hasn’t been too badly affected and she can still have a laugh and a joke, but recently she’s started feeling like she’s in someone else’s house, usually in the evening, and is too scared to go to the toilet or to bed. I’ve spoken to her on the phone a few times during these episodes and she will acknowledge that she must be in her home because she’s speaking to me on her fixed line phone, but is still unable to actually believe that.

There are practical things we can do for her (increase the lighting, put up direction signs etc.) and we’ll hopefully make her as comfortable and as happy as we can. However, having watched my grandma die from this terrible disease, we both know what’s in store, and it isn’t good. My mum’s biggest fear is that she will become nasty to those around her, and the sad truth is she’s likely to be. If euthanasia was legal, she would like to consider the option, but only once the quality of her life had deteriorated significantly.

BarnacleBill's avatar

My mother is at the stage where she doesn’t really recognize us. She knows she’s supposed to know us. She requires constant care and supervision and cannot live at home. She is in a locked facility, and because she’s on Medicaid, shares a room with a stranger. She was diagnosed relatively young, age 67, and is now 78. She could go on like this for years yet as she’s in great health otherwise.

If it were me, I would like to have the ability to be injected with something and die. It’s not a life, and if I had to pay for her care, it would eat through all of my retirement savings rather quickly. Dementia care is roughly $70,000 a year.

JLeslie's avatar

I would consider moving to Oregon so I can have some control over my death. I would want to spend as much time with the people I love as possible. Travel to places I have not seen yet. Put in writing any of my concerns for my care (I want to do this anyway). Look at several care facilities, in case my family can not handle my care to the end. Write a few letters to people who have been a piece of shit to me, although I am still not sure I would send them, or have them sent after my death. Also write letters to people I love to be ad after my death, with happy memories, postive reinforcement, thank yous, and insight if I had any. Make sure my will is in order.

Aster's avatar

If I could remember, I’d take 3 teaspoons of coconut oil a day . But I’d forget.
My father in law died from this. Since he had Alzheimer’s , I don’t think he really knew much was wrong with him. He seemed oblivious and in good humor. But the toll it took on his wife was truly a nightmare. He never , as I recall, went to anything other than a nursing home. I don’t think it had an Alzheimer’s wing. And it wasn’t fancy. Near the end, he “joked” with his eyes. He couldn’t move but he kept kidding around. Hard to explain. Earlier, of course, he went through a violent stage. Luckily, his wife was from a large family and she knew how to handle it. But she was still exhausted since he often stayed up at least half the night.
I feel that all nursing home residents always said, “I’d rather die. I don’t want anyone to be changing my diapers.” But they end up like that anyway because it’s a gradual thing. They often enter a NH fully continent; because they keep falling down (you fall down in nursing homes, too) or they’re leaving the stove on all night . Risky behavior. Eventually, they either can’t walk to a bathroom or they can’t make it in time. They know the staff, their family won’t let them go home and one day they’re presented with their first diaper. In the NH environment, suicide is usually not an option and many retain dreams of “when I go home.”

poisonedantidote's avatar

I’d just try and forget about it. (sorry, real corny I know)

Honestly, I would probably just kill my self. Now, I’m not saying people who have Alzheimer’s should kill them selves, what may work for me may not work for them. Just that, memories, the ability to think, to solve problems and to just have a mind, are things that are too deeply woven in to my philosophy for life.

In my view of life, the moment I was diagnosed would be the moment I consider my self to be dead. Just like I would consider my self dead if I used a teleportation machine that made a clone of me at the other end.

I would not kill my self out of depression or anything like that, I would not consider it a sad depressing death, rather just a matter of fact thing.

ETpro's avatar

@meiosis I am so sorry to hear about your mother’s diagnosis. The fear of being in someone else’s house is amazing, isn’t it. It is hard to even imagine all the ways this pernicious disease steals quality of life from sufferers and their family and caregivers as well. There are limited cases where I would like to see euthanasia legal so long as the person themselves, while still in full possession of their faculties, asked that they not be kept alive to the bitter end. Incurable forms of progressive dementia are one of those cases.

@BarnacleBill So sorry to hear that. We have got to find a cure.

@JLeslie Yes. About like I’d approach it.

@Aster I would guess that while the ravages of the disease are terrible for the patient, they are even more brutal on their loved ones.

@poisonedantidote The challenging thing is that the moment of diagnosis usually comes well before the disease fully robs you of quality of life. I would want to spend as much quality time as possible with my wife, children, grandchildren and friends. But I’d have to face the fact that when the time actually came that there was no quality of life left to enjoy, I would probably be too far gone to remember what I was going to do about it or push through the confusion fr enough to figure out how to end it.

KatePreskenis's avatar

It is a great question. 5 members of my family have died from early-onset Alzheimer’s. It is genetic in my family(very unusual) and affects our family between the ages of 38–48. It is a sensitive issue that each person must decide for themselves. There is not space here for my full answer.. it is in The Gene Guillotine: An Early-Onset Alzheimer’s Memoir. It will be out in the next few weeks, I am in the publishing process. You can find out more information at www.katepreskenis.com
Additionally, On Jan. 29th, 2011, CNN is airing a documentary on Early-Onset Alzheimer’s disease. My family and I were interviewed as part of this documentary. You can watch the trailer at: http://edition.cnn.com/video/#/video/international/2011/01/20/wus.filling.blank.preview.cnn?iref=allsearch
Thank you for addressing this serious question.

ETpro's avatar

@KatePreskenis I am so sorry to hear that your family carries one of the gene mutations. You can be tested for it, as I am sure you know. In the book I linked to in the original question, Alice has the resenilin 1 mutation.

I will definitely look for your book and for the CNN coverage. I hope with all my might that one of the therapies currently in clinical trials pans out.

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